No quick fix

A story of DIY recovery from psychiatric drugs and misdiagnosis

By Kate Malachite

I am writing this piece because I have had terrible experiences with psychiatric drugs, and I hope that some of what I learned while withdrawing from these drugs may help people who are dealing with similar challenges.

I am not using my real name because I am keenly aware of the stigma and prejudice related to mental illness and recovery. I struggled with the decision because I am not ashamed of the issues I deal with, and I don’t want to perpetuate the idea that mental illness is something to hide. I realize however, that not everyone sees it that way. I have decided to remain anonymous so that I can be completely open about my experiences without putting myself at risk.

I have been off psychiatric drugs for a year, and while things are not always easy, I feel stronger and healthier. I hope that my story can support people who are struggling. I am not suggesting that anyone stop taking prescribed drugs. I can only speak to my experience. It took a long time, but I eventually figured out what was best for me. I wish that for everyone.

I was misdiagnosed and overprescribed drugs for years. And when I decided I wanted to stop taking them when I was 34, I encountered huge resistance, was given terrible advice, and was left to sort things out on my own.

It is fair to say that the experience almost killed me. There were a few times when I probably should have been hospitalized. I was mentally altered and actively suicidal. I was also desperate to stay out of the hospital because I knew that I would be prescribed more drugs, and that I would have trouble finding anyone who would believe that what I was experiencing was caused by withdrawal, not mental illness. I was lucky that I knew a couple of people who had seen withdrawal from psychiatric drugs before and were able to help me through it. They pointed me to the scant resources available on the topic, encouraged me not to give up, and most importantly, affirmed that I wasn’t losing my mind—I was experiencing rarely acknowledged but fairly typical psychiatric drug withdrawal, and I would eventually be okay. They broke the isolation I was feeling. I was also embarrassed that I had let this happen. I felt stupid for allowing myself to end up on a cocktail of psychiatric drugs that never really helped.

Over the past 18 months, I’ve realized this wasn’t my fault. I was suffering. I wanted to feel better and my doctors wanted that for me, too. I became a living example of what can happen in a system that overprescribes psychiatric drugs, especially to women, because medication is generally perceived as the most accessible and least expensive form of treatment. Add to that rampant underestimation by health care professionals of how hard it is to get off these drugs and ignorance of the catastrophic withdrawal effects that people often experience, and I see that what happened to me is not at all unusual or surprising.

From age 23 to 34, I was prescribed 13 psychiatric drugs: eight antidepressants, three tranquilizers, a mood stabilizer and an anti-psychotic. There wasn’t a time that I was not medicated, and I never saw evidence that any of it was working. (There is mounting evidence that SSRIs may not be as effective as long believed.) I was pretty sure that the drugs weren’t helping, but I was caught in a cycle of overprescribing and dependence that I didn’t fully understand until I started to withdraw from the drugs in the fall of 2011. It was then that I began educating myself about the issues because I was having terrible withdrawal symptoms and none of my health care providers seemed to know how to help.

I spent 11 years on psychiatric drugs to treat problems I didn’t have. Over the years I was diagnosed with Major Depression, Generalized Anxiety Disorder and a few doctors even suggested I had a mood disorder.

As it turned out, I was dealing with Obsessive Compulsive Disorder. Living with undiagnosed and untreated OCD can cause unbearable stress in a person’s life, and is usually accompanied by shame, stigma and a sense that there is no way out. All of this can lead to depressive, isolating behaviours that superficially look like other mental health issues. OCD is far more complex than the pop culture image of a germaphobe who washes their hands too much or someone who checks repeatedly to make sure they locked the front door. It’s not hard to diagnose if you know what to look for, but it seems that few mental health professionals are trained to probe for clues when part of the disorder itself is a compulsion to hide it out of misplaced guilt and shame.

Looking back, I see now that I started having OCD symptoms when I was very young. I was seven years old when I realized I felt compelled to do things that other people didn’t think about. I remember asking a couple of grown-ups what I should do and they told me I was fine; I just needed to stop worrying about it. I suspected in my teens that I might have OCD when I saw something on television about it, but I didn’t understand what it was—just that it seemed awful and I didn’t want it. I hoped it would go away. None of the health care providers I saw over the years recognized my symptoms as OCD.

By my early 30s, it was clear to me that OCD is what I was dealing with and I couldn’t avoid it anymore. The symptoms were so debilitating that I could barely function. I had made progress with a psychotherapist on other issues, and I decided it was time to face OCD. I sought treatment at one of only a handful of specialized clinics in the country. Within a couple of months, I began seeing huge improvements. I felt like the puzzling mental health struggles I’d had my whole life were finally shifting because I had an accurate diagnosis and appropriate treatment.

At that point I was prescribed an improvised cocktail of an anti-psychotic (Seroquel), a mood stabilizer (Lithium), a benzodiazepine tranquilizer (Clonazepam) and an SSRI antidepressant (Zoloft). Every time I had a setback over the years, I was prescribed more drugs. The prescriptions were never meant to treat OCD, and with the improvement in my symptoms, I decided it was time to stop taking medication that I didn’t need.

The doctor, nurse and psychologist at my family clinic weren’t very supportive of the idea. They didn’t mind if I stopped taking Seroquel and Clonazepam, but they were reluctant to help me with Zoloft and Lithium, the drugs I had been on the longest. They stood by their various non-OCD diagnoses and thought I still needed drug treatment. I finally found a psychiatrist in October 2011 who set up a schedule for me to taper off the drugs.

I had been taking Zoloft for eight years. The psychiatrist prescribed half my usual dose for two weeks, and told me to then stop the drug completely. He prescribed a low dose of Celexa, another SSRI, to take until I was off Zoloft. (I had an allergic reaction to Celexa after a couple of days and had to stop taking it.) The drug taper seemed fast, but when I questioned him, he suggested I seek help elsewhere if that didn’t sound right to me. With good reason, I didn’t think I’d be able to find another doctor willing to help me. I followed his tapering schedule, against my better judgment.

By then, I had stopped taking Clonazepam. I had been taking it a few times a week for several years to treat anxiety attacks and to help me get to sleep. I was told to take it as needed and stop when I didn’t need it anymore. By then I had noticed that I had to take two or three pills to have the effect that I’d had with one at first. I also noticed that I was losing chunks of memory after I took them. I used to wake up in the morning and see that I had written comments on Facebook the night before that I absolutely did not remember. This was disturbing. I stopped taking the drug. Since I was taking it only as needed, I figured I could stop any time. I learned later that taking a few benzodiazepines a month for several months would almost certainly create dependence. I had a prescription for 30 pills a month on an annual repeat. I never took that many, but I took enough to have unknowingly become dependent on them. I had no idea there were catastrophic withdrawal effects if you stopped benzodiazepines suddenly.

I had also gradually come off the anti-psychotic, which I had started a few months earlier when I was having severe PMS symptoms. The team at the family clinic suggested that Seroquel, a potent anti-psychotic used to treat schizophrenia and bipolar disorder, had been shown when taken at a much lower dose to help PMS symptoms. I was wary, but as had often been the case when psychiatric drugs were prescribed, the implication was that if I really wanted to help myself, I’d give their suggestion a try. Even at one-eighth the recommended dose, I felt like a zombie. I slurred my speech, slept 12 to 14 hours a day and had trouble concentrating. I hated it. I felt lethargic and lightheaded during the tapering, but better as soon as the drug was out of my system.

Almost immediately after reducing my dose of Zoloft, I developed what I later learned was SSRI Discontinuation Syndrome. Its prevalence is generally refuted by the pharmacetuical industry, and it is poorly understood by many doctors. Evidence shows—and my experience tells me—it is a very real condition that affects a significant number of people when they reduce or discontinue use of an SSRI, the most popular antidepressant drug class that includes Prozac, Paxil and several others. The symptoms are usually dismissed as a relapse of the condition the drug was prescribed for, but they are nothing like depression.

The most severe symptoms I had were electric zap-like sensations in my brain, drooling, relentless motion sickness, slurred speech, sweats, memory and coordination problems, restless legs and tremors. I called the psychiatrist and my family clinic and both insisted I was having a relapse. I knew I wasn’t, but couldn’t find anyone who believed me and could help. This is the point, from what I have heard from dozens of people over the past year, when most people give up and go back on the drug. Their withdrawal symptoms go away, but they are still on a drug that they want to stop taking. Withdrawal symptoms from pharmaceuticals are not uncommon, but the wall of denial and ignorance around SSRI withdrawal is unparalleled.

Around the same time, I began having what I later learned were night terrors whenever I tried to sleep. These were not nightmares. They were more like sleeping hallucinations combined with panic attacks. Incredibly vivid, violent images ran through my mind. Gruesome scenes I couldn’t even imagine when I was awake plagued my sleeping mind. I felt trapped in sleep, my body gripped with terror. When I eventually pulled myself out of sleep, I would be drenched in sweat, panting with my heart racing. I had trouble sorting out what was real and what I had dreamed. It took hours to calm down. I was afraid to go to sleep. I would stay awake for two or three days at a time to avoid the terrors. This, it turns out, is a common symptom that people experience when they taper off benzodiazepines or stop suddenly, as I did. I also had two other common withdrawal symptoms: insomnia and panic attacks. That was tricky, because those are often the symptoms that lead people to take benzodiazepines in the first place. But the nature of the insomnia and the intensity and timing of the panic attacks were different than any symptoms I’d had before. I believe my brain was trying to learn how to sleep and regulate stress without occasional chemical intervention, and it wasn’t having an easy time.

I am struck, as I write this, by the clarity and linear nature of it all—something that came after more than a year of learning about the ways that specific psychiatric drugs can mess with your body and mind when you try to stop taking them. I didn’t know any of this then, and I suspect many people being prescribed these drugs don’t know either. I was in a scary, confusing, painful fog. It felt like I was losing my grip on reality. And none of the medical professionals who had prescribed the drugs would talk to me. Literally. Not only did they deny that psychiatric drug withdrawal could cause these symptoms, but when the shit hit the fan in October 2011, they didn’t want to help me figure out what to do. I left many unreturned messages for the psychiatrist in charge of my Zoloft taper. I finally called the nurse at my family clinic, desperate for help. Her exact words were: “you went to a specialist for this. Call him. We’re not touching you.” I explained that I couldn’t reach him and he had stopped my prescriptions, so I couldn’t even go back on the drug if I wanted to. She suggested I go to a walk-in clinic or an emergency department and see if they wanted to help me.

The problem that I kept seeing was that almost all of the health care providers I consulted were unaware that SSRI and benzodiazepine withdrawal could cause devastating physical and cognitive symptoms, and the few who were open to the idea didn’t know how to help.

It was then that I connected with two people who recognized the withdrawal I was experiencing. They have worked in women’s health for decades and have seen this happen many times. They pointed me to four resources that helped me understand what was happening and start turning things around.

In The Antidepressant Solution, Dr. Joseph Glenmullen explains SSRI Withdrawal Syndrome and offers a method for safely withdrawing from SSRIs. His is one of the only guides of its kind.

What People Need to Know about Psychiatric Drugs, by E Daisy Anderson and Janet Currie, is a primer on tranquillizers, anti-depressants, stimulants, anti-psychotics and mood stabilizers from the Canadian Psychiatric Medication Awareness Group.

One of the women, a health researcher and consumer activist for prescription drug safety, had helped others through the psychiatric drug withdrawal process. She agreed to help me come up with a plan.

I was going to have to start taking an SSRI again and withdraw very slowly. And since I didn’t have a prescription anymore, I was going to have to convince a doctor to write the prescriptions I needed. I wasn’t sure I knew what I was doing, but I didn’t think the doctors I had been dealing with had a clue either. With Glenmullen’s book in hand, I went to a walk-in clinic and tried to explain, calmly and rationally, what I needed.

As sick as I felt, I realized I had to hold it together so they would not dismiss me as a relapsing, non-compliant mental patient. As I learned, such a person’s observations are often summarily dismissed. They are assumed to have nothing valid to contribute to a discussion about their treatment. It is disgusting that the lived experiences of people diagnosed with mental illness could be ignored, whether they are medicated, compliant with doctor’s orders or not. But it certainly happens.

I found a doctor who was skeptical but seemed to have heard of SSRI Withdrawal Syndrome. He reluctantly wrote a prescription for Zoloft at about the tapering doses I requested. I carefully plotted a taper according to the strategy my withdrawal consultant and I had developed, knowing I didn’t have a pill to spare.

Hand-drawn Zoloft taper calendar

I started taking Zoloft again and tapered off it over several months. I downloaded Glenmullen’s SSRI withdrawal symptoms checklist and started recording my symptoms every day. Glenmullen lists 58 documented SSRI withdrawal symptoms. Over the course of the next few months, I had 46 of them at different times, and rarely had fewer than 10 symptoms on any given day.

Once I tapered off Zoloft, the only drug I was still taking was Lithium. It was prescribed when I had been on Zoloft for six months and hadn’t shown any improvement. The theory was that Lithium, prescribed off-label (a use other than that for which it has a patent) could boost the effects of Zoloft. Usually Lithium is prescribed for people diagnosed with Bipolar Disorder or psychosis. I had neither. It is a powerful mood stabilizer that is meant to mute manic and depressive ends of the mood spectrum. It helps a lot of people who struggle with mania, and once people start taking Lithium, they tend to stay on it. So there is a dearth of literature about how to taper off the drug.

There can be serious health consequences to taking Lithium long term, and I had already shown signs of some of them while on the drug. I had digestion issues and my thyroid function had slowed enough that I needed daily medication to boost it. No one was sure what would happen to my brain when I was on Lithium alone, or what kind of effects I’d experience when I stopped taking it. My de-facto withdrawal coach consulted with colleagues and we planned my tapering schedule. As it turned out, withdrawal was relatively quick and easy. The main symptoms were positive ones—an instant boost in energy and clearer thinking. I didn’t realize what a mental fog I had been living in for eight years until it suddenly lifted. I also felt lighter physically.

For years I’d felt like I was wading through porridge trying to get things done day to day. I was used to having little energy and had built my life around it. I didn’t know if it was physical, psychological or pharmacological; I eventually just figured it was the way I was built. Moving forward, I knew that I needed to give my mind and body every advantage I could.

I took my last dose of psychiatric medication at the beginning of March 2012. To my amazement, two days later I woke up with a burst of inspiration and went for a swim at a nearby pool. I had meant to start swimming regularly for years but never managed to get there because daily life sapped my energy most of the time. I knew exercise was great for energy and mental health, and felt lousy that I wasn’t taking better care of myself. I didn’t realize how much of that energy-sapping was a result of the drugs I was taking until they were out of my system and going to the gym was suddenly so much easier.

I went back the next day and kept going. Then I joined a meditation group and began a regular practice. I started spending more time with friends and engaging in hobbies I’d abandoned years earlier. The cascading effect was incredible. I was eating better, feeling confident, doing amazing work in OCD therapy and thinking about the future with hope and excitement. I have lost 63 pounds and I am healthier than I have ever been. The past year has been a phenomenal journey of discovery. I surprise myself regularly. I didn’t think any of this was possible.

A year later, some withdrawal symptoms linger, but I am doing so much better. Most of the remaining symptoms seem to be related to benzodiazepine withdrawal. I continue to have night terrors every few weeks. When I started having night terrors 18 months ago, I began gnashing my teeth in my sleep, and the damage that’s caused has led to thousands of dollars in dental work. I work hard to maintain a sleep schedule, because falling asleep and staying asleep are ongoing problems.

I took a risk when I decided to see what life was like off medication. I had reason to believe I would be better off without psychiatric drugs than I had ever been with them, but I had been taking them my entire adult life, and I had no idea what to expect.

I underestimated the withdrawal effects I’d have and the ignorance and denial I’d face from health care providers. I am angry about the lack of support I received from many of the people I trusted with my health care. I had to act as my own advocate when I was least able to. I am certain that if I hadn’t found a few people who believed and supported me, I would have gone back on psychiatric drugs and the terrific changes I’ve made in the past year would not have happened.

As horrible as psychiatric drug withdrawal has been, I think I was relatively lucky. It could have ended tragically. I know that most people in this situation don’t have the resources I did. I was able to connect with people who knew how to help. I had understanding co-workers and the support of a few allies who lived through the worst of the withdrawal with me. And my OCD-specific therapist stuck with me, even though our work for more than a year focused mainly on crisis management and not OCD treatment.

The message here isn’t that people should avoid psychiatric drugs. Some people do very well with them, and that cannot be discounted. From what I have seen, the problem is when diagnoses are made hastily, medications are prescribed freely, and there is a dangerous lack of understanding about the long-term consequences of these practices in people’s lives. Compound that with the prevailing refusal within the biomedical system to listen to people once they have a mental illness diagnosis or are taking psychiatric medication, and it’s a real mess.

Many of us might benefit from psychotherapy more than psychopharmacology. That has certainly been my experience. It works really well, but it isn’t easy. Therapy with a clinical psychologist is expensive and doesn’t claim to provide the instant relief that pills supposedly do. And it’s not covered by provincial health plans. Psychiatric care is covered, but in an overwhelmed system, most psychiatrists don’t offer therapy—they provide diagnoses and recommend medications.

The way our health care system is structured, pills are generally perceived as cheaper and simpler than psychotherapy because many prescriptions are covered by provincial health insurance plans while psychotherapy has limited or no insurance coverage. Many people who are having mental health issues can’t afford psychotherapy. But lots of people can afford medication. Other potentially helpful non-drug treatments, like acupuncture and biofeedback, are also financially out of reach for many people because they are costly and rarely covered by insurance.

This speaks to the pharmaceutical industry’s influence on what treatments public and private health insurance plans will cover and, consequently, the way that people are treated for psychiatric conditions. The system is set up to prioritize drug interventions, and that can lead to devastating consequences for people who would do better with other therapies.

In an ideal world, diagnoses would be made based on attentive, compassionate assessments, psychotherapy would be available to anyone who needed it, and psychiatric drugs would not be the default treatment when people are struggling emotionally.

What can you do if you are going through psychiatric drug withdrawal?

Know that what you are experiencing is real. There is a small but vocal community of people who document psychiatric drug withdrawal symptoms. The information is out there. You are not alone. Check out the resources below.

You have nothing to be ashamed of. Not mental health struggles, and not being on medication or having a hard time getting off it.

If your health care providers don’t believe that you are having withdrawal symptoms, try to find a professional who is willing to work with you. It is hard to be your own advocate when you are in the throes of psychiatric drug withdrawal, but you know yourself best.

Try to find a friend or family member who can help you assemble information, act as a sounding board and accompany you to appointments.

Chart your symptoms.

Be clear and concise with health care providers. Respectfully offer concrete suggestions and be willing to compromise within your limits.

Don’t give up on yourself. Don’t ever doubt that you deserve to be as well as you can possibly be.

Resources

It’s difficult to find resources that accurately detail psychiatric drug withdrawal symptoms and tools that can help. Here are a few that I found particularly helpful: